The decision to place Robert in an assisted living
facility was not an easy one. It isnít easy
for anyone but, to be honest, it was not only
gut-wrenching but I was pretty hard headed about it.
Denial is a highly regarded trait in my family and I
wasnít about to give it up now.

Before moving Rob to his Care Facility, Robert lived in
a town 90 minutes away from me. He lived with Judy
who is several years older than Rob and also suffers
from epilepsy. They have been together for twenty
years or so although Rob actually tells people they have
been together for 35 years. That puts him
at, um, age nine when they got together. Itís
quite amusing to watch the listener puzzle through the
math once Rob says this but I know how important it is
to Rob to think he knows how long he and Judy have been
together so I usually let the listener remain puzzled,
and eventually, slightly alarmed.

Rob and Judy talked about marriage for many years but
both would lose some government assistance if they
married. They are very religious which made the
decision for them not to marry all the more
disheartening for them. They purchased rings
anyway, lived together, cared for one another, went to
church together but, ultimately, never married.

Robís mental ability declined over the years due to the
seizures, brain surgeries and head injuries and Judyís
has never been much better. Despite these
obstacles, they took care of their household, walked to
the grocery store together, somehow got to doctor
appointments and church on their own and managed their
medications by themselves.

For many years, this arrangement worked just fine.
There were instances where one or the other would end up
in the emergency room because they had a seizure on the
way to the store or at home and hurt themselves, but
there werenít any major mishaps.

Our father lives in that same town and, for years, I had
no problem letting Dad help Rob with anything extra that
needed to be handled such as finances and occasional
transportation needs. Now, if you actually knew my
Dad you would question my sanity for leaving even the
slightest bit of responsibility to him.
ďResponsibleĒ is not a characteristic attributed to my
Dad. By anyone. Ever. I knew this
then, I knew this as a child and I still know this.
But, denial came in handy at the time and I was able to
concentrate on my own family and career until it became
painfully obvious that I needed to step in to help my
little brother.

In November 2008, Dad brought Rob and Judy to my house
for our annual Thanksgiving dinner. My other
brother came with his family, my husbandís family came
with their wives or girlfriends, our girlsí boyfriends
were over Ė it was the usual chaotic family
Thanksgiving. Good food, great fun and lots of
family drama.

Rob showed up with a black eye (which Dad failed to
notice). Neither Judy nor Rob have very good
memories or communication skills so it was difficult to
piece together the story surrounding the events leading
up to the black eye but we did the best we could.

Apparently, Rob and Judy walked to the store. A
homeless woman befriended them on their way home.
Judy invited her to live with them. Homeless Woman
readily agreed and took it upon herself to become
ďcaretakerĒ for Rob and Judy in exchange for room and
board. One day, Judy had a seizure and was
convulsing on the kitchen floor. Rob was caring
for her as he had for years (kneeling beside her and
keeping her from harm). Homeless Woman
didnít think Rob should do this and tried to move Rob;
he resisted; Homeless Woman punched Rob in the face.

My other brother and I huddled and formulated a plan to
remove Homeless Woman from their home. We
contacted the police, Adult Protective Services and an
attorney. We staked out Robís home in order to
talk to Homeless Woman and convince her to leave.
In the end, my other brother paid Homeless Woman to
leave their house.

My involvement in Robís care was now essential and no
longer deniable. Once this immediate crisis was
resolved, I contacted social services to see about
getting in-home care for Rob and Judy. Obviously,
they were past the point of being able to make good
decisions for their care and well-being. I
stressed that they were both mentally challenged and
that I should be at any meeting a social worker had with
them. Soon thereafter, a Social Services
representative came to visit Rob and Judy without my
knowledge and left when Rob and Judy told her they were
able to take care of themselves. She had no choice but
to believe them.

During this time, Rob was also battling a severe
infection that had resulted from a recent surgery.
He was participating in a medical study for an
electrical stimulus device intended to stop seizures
before they occur and Robís infection spread to the area
of the device which was implanted just under the skin in
his chest. Rob called the medical study nurse to
say the device was coming out of his skin. He had
not noticed an infection in that area until it had eaten
away so much skin, the device was physically coming out
of his body. He landed in the emergency room
immediately.

The infection spread through the device, up the
electrical leads to his brain. More surgery ensued
as did a long-term hospital stay during which he
received a course of round-the-clock intravenous
antibiotics.

My intervention may have come too late.

Eventually, I had Rob transferred to a Skilled Nursing
Facility near me. I was able to visit him every
day (probably trying to assuage my guilt for not
realizing he needed help long before I finally
recognized it). Rob stayed there for a couple of
months while receiving even stronger antibiotics,
battling his severe infection.

While at the Skilled Nursing Facility, I had several
meetings with the out-placement director. I still
thought Rob could go home once the infection was cleared
up and he and Judy could continue managing on their own,
with my assistance on the weekends, and, hopefully, a
few hours a day of some competent in-home care.
The out-placement director told me this was not
advisable. I donít even think he was that nice
about it. He flat out told me Rob could not safely
live on his own. I continued to think they just
didnít know Rob, that Rob had been able to do fairly
well, until recently, on his own. I also argued
with the facility about the ďmental retardationĒ
notation on Robís chart. Sure, he was slow to
answer but that was because his brain was in a fog and
not able to process conversation as quickly as others.
He was not retarded and what an archaic description!
I was incensed he was saddled with this label.

While visiting Rob everyday, I slowly began to realize
that he really could not take care of himself. He
did not make safe decisions. His short-term memory
was terrible. He occasionally couldnít make it to
the bathroom on time. Yet, he did everything the
nurses asked of him. He was polite. He
dutifully took his medications and ate all of his meals.
In fact, he ate as if he hadnít eaten in ages.
I eventually realized that Rob needed more help than I
could give him on the weekends or a caretaker could give
a few hours a day.

The nurses at the Skilled Nursing Facility loved Rob.
He was a sweetheart and they cared for him with extra
attention due to his seizure activity. Amazingly,
neither the nurses nor residents feared him even though
he was probably the only resident who would fall
backwards without warning Ė sending little old ladies
scurrying out of his way.

Even faced with all of this information and new insight,
I struggled with the decision to send him home to live
with Judy or find a suitable Assisted Living Facility
for him. I hated to take Rob from Judy and worried
what would happen to her if we found a Care Facility for
Rob. I fretted about taking away his autonomy but
had to weigh that against safety and health concerns.

Rob couldnít decide what he wanted to do either Ė some
days he wanted to go back home to Judy and other days he
wanted to live in a Care Facility and have people make
his meals, give him his medications and keep him
healthy.

Our Mom had died nine years earlier and I wondered what
she would have wanted for him. Would placing Rob
in a Care Facility have upset her? Would she want
that for her youngest son? Dad thought it a
terrible idea but his notions of Care Facilities had
been formed 60 years ago as a child when he saw his
grandparents warehoused in a facility. Plus, he
had proven he wouldnít be much help if Rob went back
home.

Ultimately, I decided to place him in an Assisted Living
Facility near me. I told Rob (and myself) that
this would be on a trial basis and we would see how
things went. I couldnít make a permanent decision
so approached it as a temporary solution, which Iíve
come to realize, almost a year later, that this was the
best possible choice for him.

Dad visits once a month and brings Judy with him which
is probably the nicest thing my Dad has ever done in his
life.

Rob is long past his infection and has become quite
active in the Care Facility. He gained a lot of
weight because the boy does like to eat. My visits
have dwindled to two to three times a week and I have to
time them so as not to interfere with bingo or church
(Rob kicks me out if itís bingo time).

I still have pangs of guilt for placing him in the Care
Facility but guilt is as much in my blood as denial so
Iíve learned to live with it.

I donít know how Mom would have felt to have her son
placed in a Care Facility but my dear sister-in-law did
say to me recently that Mom would have been happy with
the facility I chose for Rob. She said Mom always
knew Rob would need that level of care if he lived long
enough.

Those kind words were almost enough to squash the guilt.
Almost.

Trish Hughes Kreis is a freelance writer and full-time
Legal Administrator who coordinates the care of her
youngest brother, Robert, and has managed to
persistently navigate the maze of social services and
government programs available to help her brother.
She can be contacted at thkreis@sbcglobal.net or through
her blog www.robertssisster@att.net.